I haven't written an update on the Epilepsy activity in my life since the 11th of March. For one thing I'm trying to add a little variety to this blog and for that reason have posted a couple of other things, and for another I'm tired of always having to report negative things. I guess it's time to update again, although putting it all together seems like a monumental task as I sit here at my laptop on this Saturday morning. This stuff is pretty personal, but if it helps someone out there who has Epilepsy and who is going through a rough time, then I don't mind sharing...
At this point I'm in the waning days of the worst monster migraine of my Epilepsy career...
It's becoming clear to me that something is going to have to change. I'm not sure what yet, whether it will have to be something at work, or something with my medications, or something else. But the experiences of the past 2 weeks have made it clear that it cannot go on like this because it's getting dangerous.
Let me start with some good news: there was a phase of a few days that were pretty good in between. Days where my head was relatively clear and I actually felt some zest for life again. Seizure activity was almost non-existent, and that little bit was very weak.
Then, around the 18th or 19th of March, two weekends ago, my brain began to feel funny again. I'd be working around the kitchen or doing something in the apartment and suddenly forget what I was doing. Later in the day I began to have rather unpleasant complex partial seizures- with nausea. It was pretty clear that a bad phase was beginning again, though I desperately hoped I was wrong. I woke up in a light daze Monday morning and it increased as the day wore on, continuing to get worse on Tuesday as well.
By Wednesday it had blossomed into the worst monster migraine that I've ever had up till now...
There is no way for me to adequately describe that condition. I was like the person in the photo at the beginning of this post, dead, except that I was still walking. Walking dead. I was so bad off that I didn't even realize how bad off I was. I got up and went to work, dead on arrival. I couldn't think. I couldn't feel. I didn't really know where I was or what I was doing. Looking back now it's almost as if I'd been on an alcoholic binge, complete with periods of blackout. On top of that I was locked in the vice grip of anxiety. I couldn't eat or drink. The mere effort of turning my PC on at work was a gargantuan task.
That was the 22nd of March. The migraine had weakened just a tiny bit the next day- it was still extreme- but I had 4 very, very unpleasant complex partial seizures that lasted around 5-6 minutes each, this time with the nausea that makes me fear that the CPS will go over into a grand mal seizure- which none of them did, thank goodness. They all happened at work and that would have been the end of my career for sure! I had a few CPS on other days during the period I'm writing about, but they were all short and relatively weak.
That monster migraine just started ebbing away last Thursday evening, the 30th of March. That means that it lasted for 11 days, most intensely for 8 of those days, raging mercilessly, unendingly, day and night, all-encompassing, robbing me of my very humanity. I had no energy whatsoever and felt like I was crawling on all fours. I couldn't think. I couldn't feel. My body moved around on automatic but I wasn't really there. I was in there looking out but couldn't process what I was seeing, even while going to appointments in town, crossing streets and stuff without really even being aware. I suspect that I may have even begun to have absence seizures as well because I'd be with other people who'd be talking and suddenly realize that I'd missed a whole sentence, for example, because I'd "been gone" for a couple of seconds. I truly came to the point where I wondered if I wasn't simply going to snap.
And still I tried to work...
But that didn't work out well at all. I am a counselor, and how do you counsel others when you yourself are dead and can't feel anything, aren't really even human anymore? My work requires that I have a delicate hand emotionally with my charges. That simply was not possible during this migraine and I made mistakes. As a matter of fact that has been getting more difficult with each consecutive migraine over the past I don't know how long- I just haven't been willing to admit it. It's time to admit that it's gotten so bad that I am no longer fit for work when I have one of those monster migraines- and they are all too often. For all of my work ethic, which tells me that a man goes to work no matter how sick he is. For all of the normal existential fears that we all have of losing our employment and our independence, etc. If one is not fit for work, one is not fit for work, period...
So something has got to change because I can't keep going out into the world in that condition, and I especially can't keep going to work like that. For one thing I can no longer be trusted to do my work right in that condition, and for another I am in danger of stepping out in front of a car while crossing the street or something when I'm like that.
But what can be changed? I have an appointment at the neurologist's on Monday and maybe he'll be able to do something about it, change my medication for example. That would be the easiest answer of course: take a pill and it all gets better...
If the neurologist doesn't have any ideas? The fact of the matter is that I'm not fit to work anymore during those phases, and actually not even fit enough to leave the apartment alone- at least part of the time. What I end up doing is going home from work early every day for 8-9 days in a row (after not having really been able to work), so maybe I should try getting a sick slip right away when the bad time begins and stay at home in absolute peace and quiet for like 2 straight days, in the hope that it all quiets down right away and doesn't go on for days in a row. I'm definitely going to have to stay home on the very worst days from now on.
I think I'm going to stop there. Otherwise I may find myself spiraling down into dark fears of possibly being forced to reduce my working hours- and all of the difficulties that would entail, all the way to having to go on disability...
I think everyone with Epilepsy knows how it is: everything looks dark and forbidding when you're in this phase. It seems like everything is going wrong and nothing will ever be good again. You're in the grip of anxiety and you're emotions are all mixed up. You can't think straight. You imagine the worst, like thinking it's probably over and all is lost and you'll have to go on disability and live like a pauper for the rest of your life.
It's important to remember that things will look brighter again when this bad phase is over.
If only it would feel like that...
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